“What do you want people to say?,” a friend asked after I shared my reluctance to go places with my 2-year-old son. Her question continues to bother me and only recently have I understood the reason. Here's the scenario. A tumor condition, a missing portion of skull bone, multiple surgeries, etc. etc. etc, has left my son disfigured on the left side of his face. Our family faces yet another crossroad — pull the left eye and put in a prosthetic, or keep the non-functioning eye — not for any medical reason, just to make him look more 'normal' (whatever 'normal' means). More trips to specialists have been added to the schedule, this time across the country.
Awhile back at the grocery store a little boy got frightened when he saw my son. The mom tried to console the child hiding behind her legs, saying, “It's OK honey, all babies look like aliens when they are little.” One time my son was at the pediatric surgery center awaiting another eye surgery (the fifth or sixth, I lose track). A mom brought her son by force up to my son, and said, “See? I told you he's not a monster.”
Regardless of going to restaurants, the post office, grocery stores, parks, the mall, wherever, we can count on the comments, the whispers, the pointing. So I revisited my friend's question to get a sense of why it frustrates me. I thought it was because I had no answer for it. It turns out I do know, but I keep it to myself for fear of coming across as a jerk. I'm good at ignoring and brushing off certain comments. If someone insists on information about my son's appearance, I suck it up and fork over the details. What do I want people to say? Say nothing. Let our family enjoy eating out together without being approached and told of nurses in Africa performing surgeries on children with, “hideous, monstrous deformities.”
You may wonder what any of this has to do with religion in Spokane. Well, I'll tell you. Our family was enjoying breakfast at a local coffee shop one Sunday morning before church. A man spotted my son, came up with a wince on his face, and said, “Ooooh, what happened?” We explained, to which the man replied, “You just need to pray for healing. Jesus can heal him. Jesus still works miracles. You need to keep praying.”
Two weeks while walking Ava to her classroom, she looked up and asked me, “Mama, where’s Tito?” Surprised by her question, since we had not seen him since the previous Sunday in the nursery, I asked her.” Do you miss Tito?” Promptly and cheerfully she replied yes. My three year old daughter doesn’t see anything other than another little kid that she likes to play with every time she sees him. People always comment on Ava’s red hair where ever we go, never fails. In my attempt to become more sociable, I have tried brush off obvious observations. When I start getting questioned out in public about where her hair color comes from since neither do I or my husband have red hair, my attitude changes. It may be my defense mechanisms, or the fact I think people should just leave my kid alone. But I have little comparison to the experience that people put you and your family through. Tito dances, Tito sings, and boy howdy does he LOVE graham crackers! I see nothing short of an amazing little man that was made in HIS image. Those who cannot see that, either are blind, or are not really looking. Lace, you are an awesome women of God and an even more amazing mommy. I am honored to know you and your family.
Good evening Lace,
Thank you for sharing your thoughts and feelings with us. You know, being stared at does sound hard and annoying, wearing a simple scarf for instance can be very attractive to people who will make you feel isolated and alien. But it all depends on how you react to their behavior, in my case I always face ignorance with a smile and a happy face! What you and your family are going through is a blessing in disguise and you are living up to this challenge, patience is rewarded.
Well communicated, Lace. Thank you for insight into your life.
How can people be so insensitive? I’ve had the honor of meeting little Tito and there is nothing monstrous or alien about him. In fact, he may be the most adorable 2-year-old I’ve ever seen.
“If you don’t have anything nice to say, don’t say anything at all.”
Funny how quickly adults can snap that command to children, but so easily forget to apply it to their own lives.
We don’t need to pray for a miracle. Tito IS a miracle.
As a mama, I truly cringed reading your account of reactions to your precious child! I’m so sorry people have been so insensitive.
I’m still amazed people have thought that, let alone said it. I wish someone could glare them down before they had the chance to open their mouths and speak damaging words. I’m with Tracy, Tito is a beautiful child, intelligent, and delightful, and it is a joy to know him. I know everyone who knows Tito throughout his life will see that, even if they are unfortunate enough to see it second.
Thank you all for your supportive comments. People who get to know Tito see him for who he is, a wonderful human being and little boy.